My Brain Tumour Adventures: The Story of a Little Boy Coping With a Brain Tumour

My Brain Tumour Adventures

When Sharon Dempsey’s young son was diagnosed with a brain tumour she searched in vain for a book to explain his illness to him. Realizing she was going to have to write it herself, she collaborated with the illustrator Gabbie Collins to produce this short explanatory picture-book which guides a child through the experience of having a brain tumour. Written for 2- to 7-year-olds, My Brain Tumour Adventures helps children and the adults involved with their care use storytelling to come to terms with radiotherapy, chemotherapy and the side effects of their medicine. Sharon Dempsey identifies creative and positive ways to explain the illness and its treatment. In a child’s imagination a scan can become a space mission, or an operation can be transformed into a pirate’s adventure. Paediatric professionals and counsellors, cancer research and support organizations, and, of course, those children with brain tumours, their parents and siblings will all find this illustrated book an essential resource. Sharon Dempsey graduated from Queen’s University, Belfast in 1991 and trained as a journalist at City University, London. She worked as a freelance journalist and PR executive before becoming a mother to Kate and Owen. Her son Owen was diagnosed with an ependymoma brain tumour in February 2000. He received neurosurgery at the Heath University Hospital in Cardiff and most of his chemotherapy at the Royal Hospital for Sick Children in Belfast.

My Brain Tumour Adventures The Story of a Little Boy Coping with a Brain Tumour Sharon Dempsey Illustrated by Gabbie Collins

Jessica Kingsley Publishers London and Philadelphia

All rights reserved. No part of this publication may be reproduced in any material form (including photocopying or storing it in any medium by electronic means and whether or not transiently or incidentally to some other use of this publication) without the written permission of the copyright owner except in accordance with the provisions of the Copyright, Designs and Patents Act 1988 or under the terms of a licence issued by the Copyright Licensing Agency Ltd, 90 Tottenham Court Road, London, England W1T 4LP. Applications for the copyright owner’s written permission to reproduce any part of this publication should be addressed to the publisher. Warning: The doing of an unauthorised act in relation to a copyright work may result in both a civil claim for damages and criminal prosecution. The right of Sharon Dempsey to be identified as author of this work has been asserted by her in accordance with the Copyright, Designs and Patents Act 1988. First published in the United Kingdom in 2003 by Jessica Kingsley Publishers 116 Pentonville Road London N1 9JB, UK and 400 Market Street, Suite 400 Philadelphia, PA 19106, USA www.jkp.com Copyright © 2003 Sharon Dempsey Illustrations copyright © 2003 Gabbie Collins Library of Congress Cataloging in Publication Data A CIP catalog record for this book is available from the Library of Congress British Library Cataloguing in Publication Data A CIP catalogue record for this book is available from the British Library ISBN 1 84310 125 4 ISBN pdf eBook: 1 84642 373 2 Printed and Bound in Great Britain by Athenaeum Press, Gateshead, Tyne and Wear

For Owen

An adventure is defined as a risky undertaking of an unknown outcome – for me this sums up what Owen has been through.

When I became ill I was afraid. I had headaches and felt sick. Sometimes everything looked blurry.

At the hospital I had a scan. I pretended I was going on a space mission. The doctor gave me special medicine to make me sleep during the scan.

My family were worried because I had a brain tumour. The doctor explained that a brain tumour is a cluster of abnormal cells growing in the brain.

I had an operation to remove the tumour. Mummy and Daddy stayed with me until the sleeping medicine worked its magic. This time I pretended to be a pirate going on an adventure.

When I woke up, Mummy and Daddy were beside me. My head hurt. The nurses helped to make it better.

My family and friends sent me lots of cards and presents. I made friends with other ill children while in hospital.

When I recovered from my operation I had special medication called chemotherapy. I had a central line fitted under my skin to help the nurses give me chemotherapy. My doctor called this line Mr Wiggly.

Chemotherapy can cause hair loss. My dad took me to the barber’s to have my hair shaved off before it fell out. I looked cool.

Chemotherapy attacks the tumour cells. It also affects other normal cells. Sometimes I needed blood and platelet transfusions to replace the normal cells.

At times I felt sick and did not want to eat. Even chocolate tasted yuk! Chemotherapy affects the taste buds making normal foods taste strange.

I had to take medicine and use a mouthwash to stop my mouth from becoming sore. My mum called my mouth care Mr Swishy. Chemotherapy increases the risk of infection in the mouth. Careful oral hygiene can prevent mouth ulcers.

When I needed radiotherapy I had a special mask made. Plaster was moulded around my face to create a cast. I imagined I was an Egyptian mummy.

I had lots of x-rays taken before my mask was ready. It was strange to look at a plastic mask of my face.

During the radiotherapy I had to lie very still. This time I pretended to be a knight in armour going into battle.

When I became ill lots of people helped to make me better.

But while they were busy helping me, I went on lots of adventures!

Useful Contacts UK and Ireland BACUP

3 Bath Place Rivington Street London EC2A 3JR Telephone: 0808 800 1234 (UK only) Website: www.cancerbacup.org.uk

Brain Tumour Action

124 Crewe Road South Edinburgh EH4 2NY Telephone: +44 (0)131 315 7299 Website: www.braintumouraction.org.uk Email: [email protected] CancerLink

11–21 Northdown Street London N1 9BN Telephone: 0808 808 2020 (UK only) Website: www.cancerlink.org

Irish Cancer Society

Marie Curie Cancer Care

5 Northumberland Road Dublin 4 Ireland Telephone: +353 (0)21 450 9918 Website: www.irishcancer.ie Email: [email protected]

89 Albert Embankment London SE1 7TP Telephone: +44 (0)20 7599 7777 Website: www.mariecurie.org.uk Email: [email protected]

Macmillan Cancer Relief

Sargent Cancer Care for Children

Anchor House 15–19 Britten Street London SW3 3TZ Telephone: 0808 808 2020 (UK only) Website: www.macmillan.org.uk Email: [email protected]

Griffin House 161 Hammersmith Road London W6 8SG Telephone: +44 (0)20 8752 2800 Website: www.sargent.org Email: [email protected]

Tak Tent Cancer Support

Ulster Cancer Foundation

Flat 5 30 Shelley Court Gartnavel Complex Glasgow G12 0YN Telephone: +44 (0)141 211 0122 Website: www.taktent.org.uk Email: [email protected]

40–42 Eglantine Avenue Belfast BT9 6DX Telephone: +44 (0)28 9066 3281 Website: www.ulstercancer.org Email: [email protected]

Tenovus Cancer

Information Centre Velindre NHS Trust Velindre Hospital Whitchurch Cardiff CF14 2TL Telephone: 0808 808 1010 (UK only) Website: www.tenovus.com Email: [email protected]

Brainwaves Northern Ireland

Imperial Buildings 72 High Street Belfast Northern Ireland

USA and Canada American Brain Tumor Association

2720 River Road Des Plaines IL 60018–4110 USA Telephone: +1 847 827 9910 Website: www.abta.org Email: [email protected] American Cancer Society

Telephone: +1 800 227 2345 Website: www.cancer.org Canadian Cancer Society National Office

10 Alcorn Avenue Suite 200 Toronto Ontario M4V 3B1 Canada

Telephone: +1 416 961 7223 Website: www.cancer.ca Email: [email protected] Cancer Care Inc.

275 Seventh Avenue New York NY 10001 USA Telephone: +1 800 813 4673 Website: www.cancercare.org Candlelighters Childhood Cancer Foundation

PO Box 498 Kensington MD 20895–0498 Telephone: +1 800 366 2223 Website: www.candlelighters.org

Midwest Children’s Brain Tumor Center

The Brain Tumor Society

Lutheran General Children’s Hospital 2nd floor, Room 113 1675 Dempster Street Park Ridge IL 60068 USA Telephone: +1 847 723 5105 Website: www.childbraintumor.org

124 Watertown Street Suite 3-H Watertown MA 02472 USA Telephone: +1 800 770 8287 Website: www.tbts.org Email: [email protected]

St. Jude Children’s Research Hospital

The National Childhood Cancer Foundation (USA and Canada)

501 St. Jude Place Memphis TN 38105 USA Telephone: +1 901 495 3300 Website: www.stjude.org

440 E. Huntington Drive PO Box 60012 Arcadia CA 91066–6012 USA Telephone: +1 800 458 6223 Website: www.nccf.org Email: [email protected]